Mild autism

[Sailorsgirl44]

My son is 8 and we were told last year that he has mild autism.. I've been browsing through posts on Mumsnet and have seen it said a number of times that this is no such thing?

The reason we put him through the assessment process was because he struggled a lot in his first year in school. He lashed out at other kids a few times and the teacher said he would find it hard to calm down after things like lunch break. In pre school he had fought quite a lot with another kid and had been bored a lot. In play centres I often had to leave early as he would have had enough of it and would go on and on at me until I left. At home he adores one sibling and is very easily irritated by the other.

I've noticed huge improvement in him over the years. For example we used to bring earphones to the cinema as he hated the loud noise at the start. The assessment team really focused on this issue. But after covid this didn't seem to be an issue in the cinema - we don't need the earphones any more. His behaviour with other kids is much better - he knows to walk away if there is a problem (as I've repeatedly taught him).

He does make eye contact, he can maintain conversations etc. He does sometimes make odd sounds - silly voices, etc. He also used to suck his clothing (around his neck) but seems to have largely grown out of that. He does hold his hands up in front of himself like a squirrel sometimes.. It seems odd. But if ever I say stop talking that way or put your hands down he will comply straight away.

He does have some class friends but due to covid I haven't seen him playing with them as much.

In school he gets a movement break every day from class. He's allowed to use putty if he wants to. And he is allowed to go to the back of the class to chill out if things feel overwhelming to him. I'm happy for him to have these supports in place. But I wonder if he was misdiagnosed?

@Rhubarblin

I've found your thread really useful OP. I'm just at the start of this journey with my 3yo with GDD and possible ASD.

I'm in England and I have heard 'severe autism' used by professionals as during one appointment they asked if there's anyone in my family with autism or if I have any experience of it. I explained my friend's tween has autism, she is non-verbal, incontinent, has some very challenging behaviour and has just moved to residential care. They (the paediatrician) described her as 'severe'.

In the ‘old’ days which aren’t that very long ago your friends daughter would probably been given the same diagnosis as my son - Classic Kanners Autism. It’s autism as described by Leo Kanner and I’m of the opinion that people abbreviated it to severely autistic in order to make it easier for people to understand. Far easier to say someone is severely autistic than to say what the diagnosis is and then have to explain it.

My son is a grown man now and I’ve lost count of (and interest in) all the names his type of autism has been called over the years when someone else has a ‘good’ idea and decides to change things and confuse people even more. Is it incorrect to say someone is severely autistic? No. It’s not because it doesn’t take away from a persons situation the way ‘mildly’ does.

@Sailorsgirl44

Thanks for all the feedback so far. Another question.. The silly voices or having his hands like a squirrel are more often at times when he is relaxed. I get that someone with autism may stim to help themselves prevent getting stressed. But would they do the stimming at a time when they are at home in a chilled environment?

My son stims when he’s excited and having a good time. It’s not a distress thing for him at all.

@Fluffypastelslippers It is diagnosed using three levels of increasing severity in some places.

I’m Autistic, diagnosed as an adult after self-referring. I can mask pretty well but I have to ensure that I have recovery time because masking is tiring. I was diagnosed in 2016 with “Asperger’s”. My assessor at the time said that she knows the term has fallen out of favour as such but she felt it was the right “fit”. Now I know more about Asperger I’d rather not be associated with him! I generally just say I’m Autistic and if someone wants to know more, I explain how I am and how it affects me.

I stimm, especially when I’m nervous but I find myself stimming without thinking, it’s a self/regulation thing. I feel comforted with sensory feedback. Everyone stimms, it’s just more prevalent in Autism. This is a helpful video by Joe James about stimming on Facebook but there’s lots of videos online fb.watch/8FvjceedSY/

OP you might also find this helpful in aiding your understanding of the spectrum: the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

I do think it might be helpful for you to do a course on ASD to get more insight into the spectrum and how your DS presents and his needs. No two people on the spectrum are alike but there are fundamental aspects it would be useful to know.

Surely the criteria using either the DSM V or ICD 10 don't change depending on which country you are in though?
No but it is labelled different.
Mild, moderate or severe.

@EmeraldShamrock

Surely the criteria using either the DSM V or ICD 10 don't change depending on which country you are in though? No but it is labelled different. Mild, moderate or severe.

What’s the point though? How does the label itself help. Mild and moderate sound like the same thing.

@DontSettleForMe

I’m Autistic, diagnosed as an adult after self-referring. I can mask pretty well but I have to ensure that I have recovery time because masking is tiring. I was diagnosed in 2016 with “Asperger’s”. My assessor at the time said that she knows the term has fallen out of favour as such but she felt it was the right “fit”. Now I know more about Asperger I’d rather not be associated with him! I generally just say I’m Autistic and if someone wants to know more, I explain how I am and how it affects me.

I stimm, especially when I’m nervous but I find myself stimming without thinking, it’s a self/regulation thing. I feel comforted with sensory feedback. Everyone stimms, it’s just more prevalent in Autism. This is a helpful video by Joe James about stimming on Facebook but there’s lots of videos online fb.watch/8FvjceedSY/

OP you might also find this helpful in aiding your understanding of the spectrum: the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

I do think it might be helpful for you to do a course on ASD to get more insight into the spectrum and how your DS presents and his needs. No two people on the spectrum are alike but there are fundamental aspects it would be useful to know.

What fundamental aspects are these exactly?

Essentially my understanding (and hey I’m no expert) is that everyone has traits that could be classed as “Autistic traits” but that it’s when an individual experiences traits to such an extent that it impacts on daily living and interaction with others. This is why people get wound up about the notion of “mild Autism”. I told a friend about being Autistic and she said “But only mildly”… you may experience my Autism mildly but it doesn’t mean I am mildly Autistic, just that I’m good at masking.

I've just finally had my DD's diagnosis for Autism overturned! I was completely mis-quoted and much of what was said in the parent interview was taken wildly out of context or just plain fabricated. They also put down one of their deciding factors being that she was "closely inspecting her fingers" during the in-clinic observation.

She had come straight from school (was in Reception then) and had PVA glue peeling off her fingers..... 🙄🤦🏼‍♀️ - This was one of 5 deciding factors given, which were absolutely false.

Finally had it re-looked at by the Autism assessment team at my local hospital's CDC (they couldn't re-observe her or have the school write another statement, but they did agree to re-score her based on my corrections) and they found her to not make the criteria for a diagnosis after all. This was only done due to me contacting the Patient Experience Team (sometimes referred to as PALS)

@DontSettleForMe

Essentially my understanding (and hey I’m no expert) is that everyone has traits that could be classed as “Autistic traits” but that it’s when an individual experiences traits to such an extent that it impacts on daily living and interaction with others. This is why people get wound up about the notion of “mild Autism”. I told a friend about being Autistic and she said “But only mildly”… you may experience my Autism mildly but it doesn’t mean I am mildly Autistic, just that I’m good at masking.

That’s exactly how it was explained to me: you don’t get diagnosed based on traits, you get diagnosed based on impact.

For example, one of my traits is that I don’t initiate conversation that isn’t about me. The impact is that I’ve lost all but one of my friends over the years because I don’t reach out or maintain relationships effectively.

With regard to my ADHD, a trait is that I get bored easily. The impact is that I’ve had 10 jobs in 13 years and I’ve spent a fucking fortune on equipment for hobbies I’ve dropped after two weeks.

The traits have to have a significant impact on a person’s life before diagnosis can be considered.

What’s the point though?
The point is it determines the level of support the DC receives, my DS has a fulltime SNA his autism impacts his life moderately, he needs charts, time-table, salt timer, help with coat, supervision around other DC but he is verbal with excellent memory, toilet trained, can sit for 25 minutes.
DD doesn't have a SNA she has resource hours and sits at an extra tuition table, her autism impacts her mildy, well until she became a preteen my heart breaks for her.
How does the label itself help. Mild and moderate sound like the same thing.
The level isn't about the label. A non verbal DC with no peer interaction, no awareness of toilet training needs more support.
Mild/moderate might sound the same but they're not in this home.

This is one of the most insightful views I've read about using the term 'mild' to describe someone with autism, it's from this article neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

"People who can speak aloud and have reasonable control over their motor processing are often called “high-functioning,” and yet these autistics often struggle with employment, relationships, and executive function.
My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.
“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her.
But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely."

^ It's often said that autism has a 'spiky profile', so you can't say where people struggle with what by looking at either them or a label. It's also possible to age, learn and develop cognition or greater tolerance. I think Sensory Processing Disorders are steadily taking a higher priority, but autism has been the general label applied for a long time. It is far easier to think in terms of needs than labels.

@Sailorsgirl44

We're in Ireland. And the formal diagnosis was Mild Autism. This was based on a one hour meeting with him and a child psychologist, with a SLT sitting in. And a report from the school which was done in late September when he was 7 by his Teacher who had only known him a few weeks. And a two hour zoom session with me where I answered lots of questions about him.

I am happy for him to receive any support at all at school so would never suggest this be reviewed. But wouldn't any child benefit from these supports?

Part of the reason I would question the diagnosis is that there has been huge improvement at home too (including in our long summer holidays and lockdown time). I don't do any additional things for him (like putty or deliberate movement breaks) that I don't do for my other two kids.

I'm glad to say that I find him so much easier to deal with now than when he was young. He is a good listener and his behaviour is reliably good these days.

My son was diagnosed almost 20 years ago. He attended an assessment centre 2 hours a week for 11 weeks. There he was assessed by a SALT, an EP, an OT and a play therapist. There was also a tonne of paperwork, one set for me and one set for his dad. At the end of the 11 weeks there was a multi disciplinary meeting where all professionals had to agree on a diagnosis. He was almost 3 then and diagnosed as Autistic. Over the years the diagnosis has changed and he’s now described as severely autistic with severe learning disabilities. At 14 OCD and epilepsy were added. I’m surprised at how diagnosis are given these days.

Could possibly be a mis diagnosis but I don’t have any experience of autism at the other end of the spectrum to my son.

It’s ever so tricky to get your head around
My son was only diagnosed late summer

I only took him to see a private psychiatrist as he was school refusing and I couldn’t get my head around why this was so

Even now I’m confused
One the one hand he does have many apsie traits

• taps hand and feet
• social anxiety and can be seen as not having empathy
• like a little encyclopaedia
• obsessive
• major emotional outbursts
• triggered
• very slow to leave house , get dressed , put shoes on (Jesus the shoes !!!)

But the piece that nailed it for me was the functioning If school literally makes him so anxious that it makes him ill , then I have to accept this diagnosis

Conversely he has a friend who is far more tangibly autistic , hilariously so at times ! Yet he attends school and thrives academically

A friend has a DC with "classic" autism. Completely non verbal, incontinent in teens, no self care etc. She finds it frustrating that there is a move away from labels that are easily understood by the general population, that indicate just how great her DC level of need is.

Masking costs all autistic people a huge amount, but there's a key difference, many autistic people can mask (but clearly shouldn't be made to), her DC cannot, at all.

Sailorsgirl44

We're in Ireland. And the formal diagnosis was Mild Autism. This was based on a one hour meeting with him and a child psychologist, with a SLT sitting in. And a report from the school which was done in late September when he was 7 by his Teacher who had only known him a few weeks. And a two hour zoom session with me where I answered lots of questions about him.
You like many have been let down my AON.
If you'd like to pm later, I can offer some advice, been there, had the war and survived.
I'll give you a laugh my DS was diagnosed with moderate childhood autism and an emotional regulation disorder.
What's childhood autism?
Does it disappear at 18?
DCA warriors on FB is an excellent source of information and support.

@DeepaBeesKit

A friend has a DC with "classic" autism. Completely non verbal, incontinent in teens, no self care etc. She finds it frustrating that there is a move away from labels that are easily understood by the general population, that indicate just how great her DC level of need is.

Masking costs all autistic people a huge amount, but there's a key difference, many autistic people can mask (but clearly shouldn't be made to), her DC cannot, at all.

That's not 'classic' autism. There is no such thing as classic autism.

My DS can speak aloud, though it's primarily focused on his needs and demands. He can't have a two way conversation. He is fully continent and dry day and night.

He doesn't have a diagnosis of 'mild autism'. In fact, at the time he was diagnosed it was 'level two moderate, requiring significant support'. And trust me, he really does require significant support!

it was 'level two moderate, requiring significant support'. And trust me, he really does require significant support!
Mine too his support needs are very high with no learning difficulties other than avoidance if he isn't interested he won't try or learn.

@thisisworsethananticpated different social situations will affect people differently. Between NT children you will see some who school refuse and some who don't. Likewise with ND children, some will thrive with the right conditions for them in school where others won't, because the same conditions are not quite right.

It is a big learning curve. DC1 requires a lot of support and still hates going. School are hugely supportive and are trying lots of things to help him settle. When I was at school I did well academically but 'hid' socially. I never told anyone how hard things were - I became very good at being alone and pretending, largely by not talking much. Unfortunately, the consequences of this approach (what I now know was masking) are that I struggle even more with relationships and don't rely on others, even when I reach breaking point.

I don't know if this helps OP. My son was diagnosed with autism at 3 years old, he is now 9. His traits were very obvious at the point of diagnosis as he was just entering school. He goes to a great mainstream school where he is very happy and has lots of friends. Lots of the autistic traits that arise from anxiety are just not present anymore as he is relaxed and comfortable at school and at home. He can cope with all sorts of changes at school/home, goes to lots of noisy places, accepts new teachers and outings etc. He does a couple of other activities where he also seems to be accepted. I did wonder for a while if the diagnosis was wrong. However, every now and again he gets put into a new situation with someone who doesn't understand him, maybe gets a little cross at him being slow to process things and you think aha he is struggling again. I don't think he is masking at school, I just think he is happy.

@DeepaBeesKit

A friend has a DC with "classic" autism. Completely non verbal, incontinent in teens, no self care etc. She finds it frustrating that there is a move away from labels that are easily understood by the general population, that indicate just how great her DC level of need is.

Masking costs all autistic people a huge amount, but there's a key difference, many autistic people can mask (but clearly shouldn't be made to), her DC cannot, at all.

I immediately knew what you meant when you said classic autism. It’s autism as described by Leo Kanner in the 40’s, Classic Kanners Autism, and it was the blue print for an autism diagnosis for many decades.

My son who’s now a grown man has a diagnosis of Classic Kanners Autism and his diagnosis which was done by Lorna Wing and Judith Gould way back in the early 90’s states - DS exactly fits the bill for a diagnosis of classic Kanners autism as described by Leo Kanner.

I have no idea what it’s termed nowadays and because we’re very much free agents with him I can speak to the people who are involved in his life without having to think twice about semantics.

My son has classic Kanners autism (amongst other things), it means he is severely autistic and that’s the way it will stay.

Biscoffee I think this is it, my friend feels she is no longer "allowed" to distinguish her child's autism (for example with the term "severe") from the autism of much more vocal communities of autistic people who, whatever it costs them, do manage to communicate, live independently, work etc.

It's not ok to say mild/severe in many circles
It's not ok to say high functioning/low functioning in some circles either

So can anyone explain in simple terms how one appropriately distinguishes these days?

that's not 'classic' autism. There is no such thing as classic autism.

There was though.